When you get the final diagnosis, it isn't a surprise. You've done the paperwork, demanded meetings, carried your child from therapy appointment to doctor to special class. You read the books and articles and scoured the internet for answers. In many ways, the final diagnosis is a relief. Now you can move forward, with a plan, an answer and an understanding. But just like every other parent, you really have no idea what you are doing, and the hardest part, is what do you say? To your child, to your friends, family. How do you tell people your child has Asperger's? Are you using it as an excuse to explain away some of the quirky behavior? Will people treat your child differently? You can only hope that for the best as you dip your toe into the world of those-who-know.
I've told a few friends and relatives, teachers, and classmates. But not everyone. In some ways I feel like I'm holding a secret, but not intentionally. I don't want to make others uncomfortable, or maybe I just don't have the time to talk about it in depth. Maybe I'm tired, but I am certainly not in denial.
I used to think 'awareness months' were slightly pathetic. I don't have an explanation for why. With this April being Autism Awareness month, it has opened my eyes to new information. Friends have emailed me articles or therapies I haven't tried or known about. It's been nice. So, in honor of Lucy, I decided to share her news on what started out, as her website. I named this website Baby Coffee when Lucy was a baby because she hardly ever slept, and I drank lots of coffee to get through the day. In my sleepy stupor, my only world consisted of Baby and Coffee. Five years later, this is still mostly true. It's been a bad week for sleep. Lucy has been excited about Easter and hasn't slept. She does not do well knowing that something will happen at some point in the future. Finally, in a rare moment of genius, I decided to move Easter up a few days. This morning, Good Friday, was Easter.
Below are a few pictures of Lucy. After that, I have included an explanation about Asperger's I sent out to family and friends. She's one of a kind, and is going to be a great inventor! She has come so far in the 3 years we've had her in various therapies. Her biggest struggles are mostly sensory overload and talking only about what she wants to talk about, incessantly. She is so smart, it's exhausting. I can't wait until she can read so she can research cannibalism and cancer and venus fly traps on her own!
Lucy was recently diagnosed with Asperger’s Syndrome, or High Functioning Autism, a neurodevelopment disorder which makes it hard to process the environment around her. This diagnosis comes after years of observations by therapists, psychologists, teachers and doctors. It was not a surprise, but rather a welcomed answer and a pointed direction to concentrate our energy. There is nothing to fix, however Lucy will continue to attend various therapies to help her become more comfortable in her own skin and process complex social cues.
The purpose of this letter is to explain behaviors you may observe in Lucy so that you can interact with her in a supportive and appropriate manner. You may observe the following characteristics in Lucy:
• Large vocabulary, above average intelligence, excellent memory
• Narrow areas of interest, to the point of obsession in those specific areas
• Strictly adheres to routines, and is very inflexible when faced with altered schedules or transitions from one activity to the next
• Prefers to do all the talking, doesn't listen very well
• May talk a lot about a particular area of interest
• Doesn't understand jokes and sarcasm very well
• Frequently resorts to playing alone
• Does not adhere to the rules of play, or doesn't understand them
• Wants to make friends, even though it's difficult
• May interact more with adults or younger children, than with children her own age.
• In general, has difficulty reading people in social situations and often acts awkward. This will improve with age, but will always be a little rough around the edges.
• Extremely sensitive to noises. May cry and hold ears when around loud noises
• Very limited diet, may eat only certain foods, refuses to try new ones
• Parties and large events are overwhelming due to amount of people, noise, new foods, new routines, and visual stimulation
• Has a hard time sitting still, needs to feel sensory input by running, jumping, climbing
• Does not like to be hugged, kissed or touched, unless initiated by her.
How You Can Help
• Please don’t try to hug her hello or goodbye (unless, of course, she initiates this). A good substitute for a hug is a high five. She is also really into ‘thumbs up’ right now.
• Don’t tell her that ‘someday’ we will (make ice cream, go to the zoo, have you over to play, etc.). In Lucy’s mind this means tomorrow and she cannot let it go. She doesn’t understand that sometimes people are just being nice. She takes everything very literally.
• Kids with Asperger’s are highly susceptible to being bullied. Please help us keep an extra eye out for this. If she tells you something happened, it did. She does not have the ability to manipulate a situation and/or tell lies (very well).